Dialogues for a neglected illness (2018-2021)
A collection of videos from the UK on different aspects of ME/CFS.
Dialogues for a neglected illness is a website that hosts a series of documentaries on ME/CFS, developed in the UK with the support of the Wellcome Public Engagement Fund.
Patients' Accounts of Symptoms
A collection of eight videos on different aspects of people's experiences with ME/CFS.
- Reduced Function (19 mins 54 secs)
- How does the disease start? (27 mins 9 secs)
- Post-Exertional Malaise (22 mins 36 secs)
- Cognitive Impairment (18 mins 13 secs)
- Sleep Dysfunction (12 mins 28 secs)
- Orthostatic Intolerance (11 mins 26 secs)
- Pain (12 mins 27 secs)
- Hypersensitivity (13 mins)
Synopsis
In these videos, people with ME/CFS describe their experiences of key symptoms.
Some of these people have only recently become ill with ME/CFS, while others have been ill for decades. Their age of onset ranges from childhood to middle age. The discussions provide insight into the variety and shared experiences of key symptoms.
Links to supplementary information are also included.
The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance
2021 - Final documentary (1hr 11 mins 35 secs)
Hard to believe that patients with ME have been treated so poorly for decades, but they have, and the stirring story of their resilience and unwillingness to be forgotten is brilliantly portrayed in these videos.
L Jason, PHD. Professor of Psychology. Director, Center for Community Research, DePaul University, Chicago.
Chapters:
- ME: the Story begins (00:00)
- ME is rebranded as a psychogenic ilness: 'Chronic Fatigue Syndrome' (9:32)
- A confusing medley of names and definitions undermines research efforts (23:04)
- The widespread and pernicious impact of a careerist psychiatric lobby (29:52)
- A devastating failure by the medical profession (53:34)
- Fundamental Systemic Injustice (1:04:15)
Last edited: 22 December, 2021